As we approach Jake’s upcoming cath on Tuesday in St Louis, I find my nerves are getting the best of me. I keep reminding myself that  life on the list is a temporary phase. And we have already made it through 181 days. I struggle to balance the desire for normal with the need to protect. Every decision is calculated, making safe choices that protect his health yet allowing him to enjoy life.  The “what-ifs” are always in our minds but we try to focus on the “when-thens.”  When the right heart comes, then he will be unstoppable.  He has always carried his illness with unshakeable faith and courage and I cannot wait to see what he can achieve with a full and healthy heart.  

This week we continued on, giving meds, taking shots, dressing changes and PT appts.  Yes, he is sometimes left bruised and tired, but these battle scars just prove his resilience and determination. Living in this waiting is not forever. The hurdles he faces today are temporary. They are not his story; they are just the first chapter in his new beginning. One where a healthy, strong heart beats in his chest.When that day comes, when that beautiful, miracle heart finds its home in him, we will look back at days like today and know the struggles were worth it. The “now” may be difficult, but a beautiful, healthy future is worth the fight.

Please keep Jake (and us) in your prayers over the coming days.  Pray for strength and peace as we approach his procedure on Tuesday, for a safe and successful procedure and for a quick recovery for him.  Thank you for your continued support!  It means so much to all of us!